Articles tagged with: Bladder

Fight Bladder Cancer is a UK based charity that was formed to provide information and support to people affected by bladder cancer. The charity started life as a small local support group but has now grown to be a very effective organisation offering global support through its new website, online confidential forum and support for local groups and research projects.

Andrew Winterbottom, founder and director of the charity tells the story of its beginnings and it's vision for the future.

Fight Bladder Cancer - the New(ish) Kid on the Block

The first strange thing about being told you have bladder cancer is that you most probably have never heard of it before. Despite being the 6th or 7th most common cancer (depending on where you live) it is a cancer that hardly ever gets talked about. The next thing to hit you and your loved ones is that there is very little information and support out there. When I was diagnosed in 2009 there wasn't a single charity in the UK dedicated to bladder cancer. Yes, there was general information, a lot of it very good, on the websites of the large cancer charities but nowhere dedicated to bladder cancer.

Whilst I was being rushed into treatment after being diagnosed with a T4G3 cancer my wife was left at home trying to make some sense of the madness that is a cancer diagnosis. In the end it was the American Bladder Cancer Cafe site (set up by patients themselves) that was the most help. The next best thing we found was a small general chat room being run as part of the Macmillan charity website where people with all cancers could chat. This was a lifesaver and a sanity saver, which also gave us the opportunity to 'meet up' with people online who also had a bladder cancer diagnosis.

A new friend who went by the screen name of 'Mike on a bike', who had been diagnosed just 6 months before me, plus his wonderful wife, were there to answer all our questions and give us suggestions for the questions we just didn't know to ask. Without that contact with other people affected by bladder cancer it would had been a very lonely and scary time. And that was why, six months post RC we decided to set up our own support group for bladder cancer patients being treated at the local hospitals to where we lived. But it wasn't long before we realised that just a local group was not enough.

Another 28 people were being diagnosed with bladder cancer every day in the UK and there was almost nothing out there for them. This made us think of a way to offer support to a much bigger audience. With an estimated 100,000 people living every day with bladder cancer in the UK, we needed to change tactics and move to a national internet based service.

And so our national bladder cancer support charity was formed in 2010 with its main outlet being a confidential forum housed on Facebook. Starting with just a few of us we have been amazed as to how big it has grown in such a short period. Now with almost 400 current members the forum is active with people supporting each other whether they are the patient themselves, a carer or a loved one. And it's not just UK people who are using the forum as we now have many from around the globe, especially from the USA, Canada and Australia.

The big project Fight Bladder Cancer took on in 2013 was the writing, designing and building of our own website. Planned from the beginning to be made patient friendly, all the work has been carried out personally by the trustees of the charity. A task that has meant learning how to build websites and how to design them so that it was easy to navigate for a patient or carer searching for help during those late nights when sleep just wasn't possible.

Our site went live early in October 2013 and now, just 4 months later, we are surprised and delighted by how many visitors we have had with almost no publicity accept for traffic from our forum on Facebook and our presence on Twitter. Already people from more than 30 different countries have visited the site.

Long term objectives

So what are the long-term objectives of Fight Bladder Cancer? As a charity we have three simple objectives:

1. Provide support and information for people affected by bladder cancer

Providing support has been the main objective in these first few years of the charity.
Building on the Internet based forum we are now starting to support the setting up of local groups so that it is easier for people to meet face to face, a bladder cancer buddy service is in it's early stages and we have started to arrange group get-togethers so that our forum members can meet each other in real life.

This year, with our website now up and running, Fight Bladder Charity is raising funds for a large national awareness campaign. The campaign has two main aims of raising awareness both with the public and within the medical profession. We are attending conferences and study days this year with urologists, specialist nurses and GPs to develop a dialogue with the medical profession and to make them aware that we exist so that they can signpost their patients to the support that we offer. All to help improve awareness about bladder cancer and get more professionals talking about it.

Alongside this we, once enough monies have been raised, intend to supply every hospital and every GP surgery in the country with posters and leaflets about bladder cancer so that patients don't feel alone and know where they can go to for information and support. This, we believe, will be the first national campaign in the UK solely dedicated to bladder cancer. A campaign that has been a long time coming.

What about social media?

Social media has helped massively in our work so far and we anticipate that it will be a key part if our campaigns in the future.

As well as running our confidential forum on Facebook, we also have an open information Facebook page where we post news articles and links to bladder cancer stories of interest. We keep this very much up to date and often have broken news here before it has reached either the mainstream media or even the specialist urology periodicals! On Twitter we have, we have been told, more followers than any other bladder cancer charity worldwide. Not bad for a very young and still very small charity! This is certainly a media route that works for us and has opened many doors for us into the mainstream media and also introduced us to urologists worldwide.

Up until now the trustees of Fight Bladder Cancer have funded most of the work of the charity but this year we have started to start fundraising with greater effort to allow ourselves to expand our work and, hopefully, to even start to look at helping to fund research.

The future?

That's simple. To do more of what we are good at and help to change bladder cancer from being the one that is just not talked about to one where outcomes are improving year on year.

If you want to find out more about Fight Bladder Cancer take a look at their website and get in touch.

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“How’d The Smoke Get Down There?” by Gene Vasconi, author of “For Bladder or Worse”

Starting

Now, no one ever told me when I was a kid and embarking on a then well accepted habit of smoking that the smoke was going to sink into my bladder. All I ever heard was, “Smoking Can Cause Lung Cancer” which was stamped on the side of a pack of cigarettes and aired on TV and radio when they didn’t have any revenue ads to play. The symptoms of that were commonly thought to be shortness of breath and a cough. I figured I could handle that and, should these symptoms develop, I’d just stop. Then again, I was 18 years old.
So, smoke I did but not puff those nasty, unfiltered things – I smoked only filtered cigarettes recommended by the cowboy who had replaced all of the doctors that had recommended them in the 50s (I guess most of them died from lung cancer). My father smoked, my friends smoked, movie stars smoked, it was a great time to be a smoker because no one complained when you lit up anywhere except a movie theater. It was the good old days.

Stopping

Of course I tried to give it up. I quit at least a dozen times for various reasons: worried about throat cancer, no air to play my musical instrument, maybe I would get mouth cancer, it was kind of smelly. But, no thought ever about bladder cancer. The usual quitting cycle was a few days; even made it a week once. Then, the rationale would drip back in about gaining weight, becoming nervous, and why the hell can’t I smoke if I want to? Zap … back I went to the smokes and enjoyed them even more.

So what caused me to quit? I knew several people with older relatives suffering from emphysema or asthma who sucked on cigarettes in their hospital beds; even heard of one guy who puffed through his throat tube. Wow. Dedication and a great role model for me.

I stopped smoking many years before being diagnosed with bladder cancer. Had nothing to do with bladders or lungs or even the cost of the smokes. It had to do with falling in love and wanting to hang around longer.

When I was single, what I smoked and where I did it was no one else’s business. I determined my own destiny and the rest of the world be dammed. But that changed when I met my future wife. She absolutely did not force the smoking issue and maybe that was what made the quitting desire so strong. I came to realize that I needed to drop the nasty habit because I wanted to honor her and try to maximize the amount of time we would have together on this planet.

Having quit many times before, I knew I had to create a strategy that would be successful this time. So, I created my own set of rules. No smoking in my apartment was a big one because I required myself to move to the balcony to smoke. Not bad in the nice weather but really put the pressure on in the cold. Another rule was no smoking in my car. I had cleaned the inside windows once (hey, I was single) and the black grunge that had collected was startling. So, no more. If I wanted to smoke, I’d need to exit the vehicle.

The one tactic I developed really made all the difference to me. I suspect some of the “positive-thinking” types would disagree but it worked for me. I began to visualize my vocal cords or lack of them after their being removed following cancer surgery. I had the hole through which I could breathe, the device so I could speak in a buzzing manner, and my career that required my voice as a media producer would be over. A very powerful image.

A bonus to being successful at quitting smoking was that my fiancé was very impressed that I had done it for her (well mostly). Guys, that was good for quite a few points! So, this was a win-win for everyone until my bladder savings account produced a dividend.

Living with the consequences

I hadn’t realized that I was creating a comfortable living space for my cancer buddies by smoking all those years and the carcinogens were helping tumors develop. Of course, I have no idea how long it took for them to grow but some 20 years after quitting smoking, they removed 27 tumors from my bladder. Here is the important part of this and is why I wrote “For Bladder or Worse.” Bladder cancer is like your shiftless brother-in-law who is out of work and in your spare room. You really have a hard time getting rid of it. I have tried for over four years and I suspect I will keep at it forever. It is expensive, long-lasting, and a continual mental challenge because, given the possibilities, you may end up piddling via a tube into a bag or even die if it spreads.

So, this is where I take a step back when talking to folks about this and simply say, “Is smoking worth it? The for-the-rest-of-your-life cystoscopes, operations, and all the other embarrassing scenarios medical folks like to put you into.” I never found anyone who says, “Yes”.

Let me add a word about marijuana. I find it odd to be sometimes on the wrong side of this with some people who support smoking pot and even legalizing it. They cite this study or that with findings that amazingly show that smoking pot can actually help you fight bladder cancer. They also don’t seem to recognize that there are over 400 substances in marijuana and that the simple act of sucking smoke into your lungs is not what they were designed to do. I continue to say, “Is it worth the possible bladder cancer risk?” To me it is not even though I already have bladder cancer.

Friends and Strangers

I close with this. Bladder cancer has enabled me to experience many things I never ever imagined I would do. Fun stuff like having an urologist (my new best friend) shove a pipe up my private member and troll for tumors, learning all about catheters, seeing how fast my wife could drive me to the emergency room when the catheter stopped up at four in the morning, having bladder spasms so deep that I would have traded it for giving birth, and learning what a stent was and why I would like to punch the guy who invented it. Add to that being on an examining table with strangers staring at your personal area (and not getting paid) and I respond to, “want a cigarette?” with, “not on your (or my) life.” I know where that smoke really goes when you inhale and what it does when it gets there and it isn’t nice!

Gene Vasconi is a television/radio media producer, speaker and author of two books. His first was “Say What: Do You Really Know What You Are Communicating?” followed by, “For Bladder or Worse” which is a hilarious book about his adventures after being diagnosed with bladder cancer. Both books are available through Amazon.com